How Can I Help My Child With Fibromyalgia?

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Category: General

Created on Sunday, 03 August 2008 19:19

Published on Sunday, 03 August 2008 19:14

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 This article was featured in the April 2007 edition of FaMily
by Kathy Longley

Any parent who sees their child suffering wants to help, it is a natural instinct we all have. If a child falls over and cuts their knee you can respond by kissing it better and giving them a hug to assure them that everything is okay and it will heal quickly. But what do you do if you start to see the signs and symptoms of some underlying health problem? How should you react and how do you know if it is fibromyalgia?

With young children it can be quite difficult to put your finger on the problem. You know that something is not quite right, but your child is perhaps unable to help. Sometimes this can be because young children have no idea of what is normal. To them whatever they are experiencing is normal so they are unlikely to remark upon it. When Claudia Marek, author of The First Year Fibromyalgia, interviewed a group of children for a study she was amazed that 50% of these children thought that everyone had pain, but others were simply braver and better at coping with it than they were.

"Pain was not one of their primary complaints probably because they simply did not know that pain isn't normal," she explains. Claudia, who has had fibromyalgia most of her life and has two sons with fibromyalgia, had this experience herself as a child: she grew up in a household where her mother and sister had blinding, debilitating migraines; even though she had a dull headache every day, she never mentioned it or even thought they were headaches as they were not the same as her mother and sister experienced. "It's all relative...," she explains. "If their [a child's] legs have always hurt when they run, they will think it's normal to feel that pain and they can't know that it's different for their friends."

Pain, however, is a common symptom of a variety of juvenile illnesses so what other telling signs may alert you to suspect fibromyalgia? By nature fibromyalgia tends to be unpredictable and inconsistent with symptoms disappearing as mysteriously as they arose. Claudia points out that the cognitive problems experienced with fibromyalgia are a good example of this and may alert you: if you find that your child has difficulty concentrating, for example doing their homework, one day, but manages very well other days then this could be an indication of fibrofog.

Children with dyslexia or learning difficulties, for example, tend to be consistent in their struggles to perform certain tasks whereas fibrofog is anything but consistent. A change in your child's sleeping patterns can also be revealing: if all of a sudden they are falling asleep on the sofa when they come home from school or are waking up uncharacteristically manytimes during the night, this could add additional weight to your suspicions.

If the symptoms are beginning to interfere with your child's daily life then you will naturally want to seek medical advice. A diagnosis can give you something to work with and can be a sense of relief for both you and your child. Juvenile fibromyalgia tends to be diagnosed by a paediatrician who will use similar diagnostic steps to those used for diagnosing fibromyalgia in adults: taking a case history, eliminating other possible causes for the symptoms and employing the tender point test.

Sometimes you may have to push for recognition or seek a second opinion especially if your doctor has little knowledge of fibromyalgia. Unfortunately, some families have had difficult experiences: "Some people have been accused of trying to make their children sick, or of projecting their symptoms on to them as part of some sort of agenda," Claudia explains.

My family had this experience when my symptoms of fibromyalgia first arose in my teens. When my mother accompanied me to one medical appointment the consultant was very brusque and clearly stated that she was simply encouraging my disability and in his opinion there was very little wrong with me. My mother's approach was to seek a second opinion to get the situation clarified. She felt that she knew her child and our family situation better than the consultant and my symptoms deserved further investigation. If you feel that you are being dismissed by a doctor then you always have the right to ask for a second opinion.

If your child is diagnosed with fibromyalgia what is the best approach to help them cope with the symptoms? Dr Mark Pellegrino, author of Inside Fibromyalgia, believes that minimal invasiveness is the best approach. His philosophy is mainly to 'let kids be kids' and allow them to live their lives as normally as possible. The main treatment could simply be a matter of reassurance that fibromyalgia is not a degenerative or deforming condition and advice on how it can be managed successfully with exercises, nutritional approaches and education. "I find that kids are more resilient and adaptable to change than adults," explains Dr Pellegrino.

"Their youth gives them a better chance at controlling the fibromyalgia and maintaining a stable baseline or remission." However, if the child is struggling at school to the extent that they are missing classes Dr Pellegrino may decide to intervene more strongly. This could involve prescribing certain medicines such as klonopin, noratriptyline or a mild pain medication and introducing a more in-depth therapy programme.

School is your child's workplace and it is important to appreciate that, just as people have to make changes at work due to health conditions, some help or adaptations may be needed for your child to continue to cope successfully during the school day. I remember one problem I struggled with was the restriction of not being allowed to visit the bathroom during lessons.

My symptoms of irritable bowel and irritable bladder made me constantly worry about getting permission to go to the bathroom which would of course make the urgency and the desire even worse. I can remember working out my routes between classes to ensure that I would always pass a bathroom, but this often made me late for class. In the end my mother obtained permission for me to leave the classroom whenever I needed to which allowed me to gain control and relax.

Other problems your child may face are difficulties in carrying large numbers of books, the constant climbing up and down stairs or the need for a rest halfway through the day. These difficulties could be solved by having permission to use the elevator, if one is present; being allowed to rest in a quiet room during lunch break; using a luggage cart or having a locker on both floors to avoid carrying so many books. It is a good idea to keep the channels of communication open between yourselves and your child's teachers and to discuss any issues before they become a real problem, as often solutions can be readily at hand.

You may need to cut down on your child's activities and allow them to be excused from school gym for a time, but as Claudia points out it is often best to let your child be the judge of what they can do. Don't underestimate your child. If they say they can do something let them have a go. "Let your children lead you," Claudia explains, "they will often know what they can do and what is impossible without you telling them... the best thing you can do is to teach them a sense of pace. If you teach your child to start a project early, to rest when work is impossible, and to catch up on better days, you will have taught them a valuable life lesson. ... Always keep sight of the fact that your goal is for your child to have an independent and productive life."

Quotes and advice given by Claudia Marek have been taken from her published book "The First Year Fibromyalgia" in which there is an excellent chapter on children and fibromyalgia.

Quotes and advice given by Dr Mark Pellegrino have been taken from his published book "Inside Fibromyalgia" which also has excellent advice for children. 

Reuben’s Story

Reuben is 12 years old and lives with his parents in Bishops Stortford in Essex. He developed the symptoms of fibromyalgia about a year and a half ago when he was at primary school. Here he tells his story:

"It all started when I was at primary school and for the first time I missed the school sports day. After that it simply got worse and worse. It came as a mental shock when I realised that it was becoming increasingly difficult to play sports and the pain was gradually getting worse.

I saw several different doctors from different professions and six months later they finally came to a conclusion and diagnosed me with fibromyalgia. I remember that day because it was my birthday, the 12th of December. The diagnosis was made by consultant rheumatologist, Dr Hazelman."

Attending school is proving difficult for Reuben due to the pain and tiredness he experiences:

"It is a really vicious circle because the pain makes it very hard for me to sleep, so I am tired the next day and unable to go to school. One of the main reasons I am in pain is probably because I am very tired. I can hardly go to school now because I am so tired. I find my teachers are not very  understanding. We are trying to find a home tutor, but at the moment I am just missing school altogether."

Having fibromyalgia has also affected Reuben's friendships and what hobbies he is able to do:

"It has affected my friendships quite a lot as most of my peers think that I'm faking it just to get off school. I feel very upset that my friends don't understand. I don't have any friends who have fibromyalgia. Also, I was an extremely 'sporty' person, but now I have fibromyalgia I am forced to use treadmills and indoor cycling machines. I have kept up my love for computers, as I find that 'distracts' me a bit from the pain."

Reuben is also struggling to find treatment that really helps:

"My parents and I have tried nearly everything but nothing really works. I have taken plenty of medication in the past including, ibuprofen, paracetamol, codeine, amitriptyline and calpol. I have also tried alternative therapies like acupuncture, chiropractic, osteopathy, homoeopathy and reflexology. But now I take vitamin supplements and herbal remedies and use a thermal heat pad and an intrasound vibrator. I think the heat pad and the vibrator are helpful but I don't think anything else is."

Reuben would love to hear from other young people who have fibromyalgia, you can contact him at: reubenlemer yahoo.co.uk